Because the Personal is Historical

The Pain of Choice: Late Term Abortion and Catastrophic Fetal Diagnoses

by Guest Author on March 18, 2014

Today’s guest author is Ginny Engholm. Ginny recently completed her Ph.D. from the University of Kentucky in the department of English. Her interdisciplinary dissertation, titled “The Power of Multiplying: Reproductive Control in American Culture, 1850-1930,” traces the rise of modern birth control in the 19th and 20th centuries. She teaches at a small college in the Liberal Arts department in Baton Rouge, LA.

Recently, there’s been a lot of talk in both the political sphere and the blogosphere about the magic twentieth week of pregnancy. For some women, blissfully unaware of the fragility of modern pregnancy, it’s the date at which they find out if they should paint the nursery pink or blue. It’s the date that they schedule the “gender-reveal” party. It’s the date at which the baby goes from being an “it” to a “he” or “she.” For others, it is the thin red line of the abortion debate, the indisputable moment of personhood, the fractious moment where anti-abortion advocates can say, “Aha! It’s really a person after all. You couldn’t possibly think that having an abortion is okay now, could you?”, the moment at which so-called late-term abortion becomes unthinkable for a large majority of the public. For some unlucky women, women like me and like Phoebe Day Danziger, it’s both.

The twenty week ultrasound, which in medical terms is actually called the anatomical scan, is the point at which many parents find out not only the gender of their child, but also whether the heart and lungs are functioning, whether the brain has developed, whether there are limb deformities or spinal bifida, or any other multitude of horrible, unimaginable “catastrophic diagnoses” for the fetus. It is also the most recent, most contentious dividing line of the abortion debate, with many states using it as the point-of-no-return for abortion, legislating (or attempting to legislate) its use as a point at which to end access to abortion. It is the deep chasm into which most women who actually do have so-called late abortions have fallen. I know because it happened to me.

My story begins several years ago. ABD* and in my early thirties, my husband and I, in the parlance of the virtual community of women actively seeking to become pregnant, were “TTC,” trying to conceive. The rhetoric of the community aptly indicates the nature of it, the way that reproduction is culturally and popularly imagined as something one “tries” for, something one aims to achieve, and the way that conception itself is heralded as the end point—not the start—of the process. At the time, I was deeply immersed in the culture and history of reproduction, working on a dissertation on reproductive control in American culture. When I began my reproductive journey, I had no idea how personal this topic would become.

As our modern ideas about TTC indicate, we have come so far from the biological, reproductive certainty of our foremothers that we have essentially come full circle. Controlling reproduction, that is, the ability to reliably prevent it, an ability that had once largely eluded women, has become so easy, so attainable, that our attention in reproductive matters has turned to getting pregnant. There are no online support groups for women trying, and failing, to prevent pregnancy. There are, though, many support groups for women trying, and failing, to conceive.

The TTC community and the larger culture of pregnancy (a culture dominated by books like the iconic What to Expect When You’re Expecting) largely imagine conception as the end of the reproductive journey, although, as Cheryl Lemus has discussed, the modern pregnancy has been shaped and reshaped by all sorts of prescriptions and cultural expectations. Yet, in some ways, the physical and biological experience of pregnancy today does not differ that much from previous centuries. While prenatal care has helped to drastically improve the chances of a successful and healthy live birth, pregnancy, fetal development, and neonatal care largely remain mysteries for modern medicine. Many women continue, as our foremothers did, to have unsuccessful pregnancies. Fetuses fail to develop correctly, or are spontaneously miscarried, or endanger the life of the mother, often for reasons that modern medicine generally cannot determine or prevent or treat. For these women, conception is not the end of the reproductive journey.

My own experiences “trying” to conceive demonstrate the difficulty of achieving the holy grail of the TTC community—the “H&H,” a happy and healthy baby. My first pregnancy, the result of a year of “trying” to achieve, ended in the late-term termination of my son, Harrison. At my own twenty-week ultrasound, which my husband and I went into blissfully unaware that anything could be wrong with our baby, I chatted inanely with him, not noticing, although my husband later confessed that he did, the ultrasound technician getting more and more quiet.

After all, I had read all of the books. I had dutifully attended every prenatal care visit and already had not one, but two ultrasounds (at 7 and 12 weeks) that showed an adorable blob of a baby that we had affectionately nicknamed “Gummi Bear.” I had even, just a few nights prior, agonized over the decision of whether or not to imbibe in a nonalcoholic beer while out with some friends—ultimately deciding against doing so since there’s still a very, very small amount of alcohol in even nonalcoholic beer. Why risk it?, I wondered, when it was so easy to do everything “right.”

But as the very kind perinatologist told me when he came into the room, as he took my hand and looked me in the eye, something was “very wrong” with my baby. My son Harrison suffered from Trisomy 18. Trisomy 18, a fatal chromosomal abnormality, is one of those “catastrophic diagnoses,” one where there is no hope of survival for the baby. As the doctor explained it to me, even Trisomy 18 babies with no clear life-ending abnormalities died. As he talked, though, the list of life-ending abnormalities that Harrison specifically had washed over me—missing heart chambers, omphalocele, spina bifida, brain lobe abnormality, excess fluid, as well as the non-fatal ones, the clubbed feet, the deformed hands and limbs. For people who think dismissively that they don’t need genetic testing, that no diagnosis would cause them to abort, to end the life of their child, who can’t imagine someone having a late-term abortion, I want them to understand that some things are worse than the worst you can imagine. Some things are worse than death. I want them to understand that Harrison’s death was a sure thing, not a matter of if, but when (a minute? a day? a month?), and with how much pain. I want them to understand that ours was not a “choice” about keeping him, but about making sure he did not suffer. I would rather have, with every fiber of my being, kept him with me for as long as I could. I would have kept him with me forever. I wanted him forever. But I’ve held his tiny, tiny body. I saw how badly, badly broken it was. I saw that any life of his, no matter how short, would only have been one of more pain and suffering than I could ever imagine. As Phoebe Day Danziger writes in her compelling and brave recent piece for Slate, “it was clear to me that what we were dealing with was choosing an end-of-life care plan for our son.”

I was counseled by my perinatologist, after much agony and turmoil and a subsequent amniocentesis to confirm the diagnosis, to induce early labor. I was then admitted to the hospital to give birth to my son, who was stillborn. My husband and I spent nine precious hours with our son. We were allowed to take photographs and dress him and hold him, just as any new parents do for their child. In spite of the pain and horror of our situation, I hold those hours among the most dear of my life, and I am forever grateful that in making the most difficult decision of our lives as parents, in choosing to let go of our son to spare him certain pain, suffering, and death, we had the privilege of being cared for by doctors and nurses who treated us with nothing but compassion, recognizing this for what it was—an act of love.

And despite the fact that this story is rarely told, my experience, as I have learned, was not that exceptional. While the numbers may be in modern medicine’s favor, the realities of reproduction’s fragility are still harsh for many women and families. I have met many mothers, both online and in my everyday life, who have experienced what I have, although many did not have even the small comfort of understanding health care providers, family, or friends. One very close friend, who I’ll call Kate, I knew before Harrison, but we later bonded over our shared loss. I learned that she had to travel to Kansas to see the late Dr. Tiller in order to make the same choices I made, in large part because of her doctor’s mismanagement of her own catastrophic diagnosis for her son and her less than supportive health care providers. Dr. Tiller, by her account, was a wonderful, kind man who did provide the dignity and comfort she sought in ending her son’s life, although the gauntlet of protesters outside his clinic made her ordeal even more nightmarish than it had to be. As my and Phoebe Day Danziger’s and Kate’s stories reveal, many parents have had to face the terrible, horrifying choice of when and how to let their much loved and wanted child go. This decision is no different for parents facing it while their child is still in the womb than it is for parents facing it while their child lies on a hospital bed. I comfort myself by thinking, as Danziger does, that Harrison knew only peace and love and comfort in his short life—that “he did not have to experience one minute away from the warmth and love of my body.”

As a culture, we are in many ways obsessed with a particular version of pregnancy, one that insulates us against the historical reality of the messiness of reproduction, and imagine a sort of what-to-expect pregnancy where by virtue of reading the right books, eating the right foods—and avoiding the wrong ones—and having a woman-centered birth plan, we can ensure a happy outcome. As Elizabeth McCracken writes in her poignant memoir of her own experiences with stillbirth, An Exact Replica of a Figment of My Imagination, as a society, we think of the fetus in the womb as a “sure thing” (2). It is not surprising, then, that the idea of “babylost,” a community of women who have experienced miscarriage, stillbirth, neonatal death and other forms of pregnancy and infant loss, is so hard for society to face. Another popular term in the “babylost” community is “medusa,” the Greek mythological female monster with snakes for hair that turns anyone who looks upon her into stone. This self-appointed label for babylost mothers describes a woman who has experienced a form of grief that is unrecognizable, and unrecognized, by society. (One particularly wonderful website in this community is Glow in the Woods, an online refuge “for parents of lost babies and potential of all kinds”).

It is an inherently ideologically fraught issue for a feminist. On the one hand, anti-abortion activists often seize on the rhetoric of the trying-to-conceive community and the babylost community to argue for the personhood of all fetuses and the resulting need to “protect” both the fetuses and the women by banning or severely limiting access to abortion and contraceptives. On the other hand, denying the grief that the women in the infertility or pregnancy and infant loss community face also plays into traditional anti-woman rhetoric of denying the very real lived experiences of large numbers of women, particularly when those experiences are ideologically messy and expose the cracks within our own conceptions of gender, reproduction, and motherhood.

Historian Leslie Reagan, in writing of her own experience with miscarriage, describes a folder she received from the hospital on pregnancy loss. She writes, “That folder, and the institutionalization of language that it represented, informed me that I was in the midst of a social process that was remaking the meaning of miscarriage.”[1] For Reagan, this making of miscarriage into a “significant event infused with tragic meaning” is part of a highly problematic cultural movement to delegitimize pregnancy termination by imbuing pregnancy with a special cultural and societal meaning. In other words, feminist scholars worry that if we culturally recognize that women see their miscarriage or pregnancy loss as a tragedy, are we not admitting that all pregnancy losses are tragedies? This concern is not without merit, given the very real campaign to limit and restrict women’s access to abortion. Yet grief and loss are complex personal experiences, deeply rooted in cultural and social meanings, but also deeply intimate. Historian and cultural critic Carrie Pitzulo argues in this post that “women have myriad experiences and feelings, but we are taught to deny the unpleasant, to hide what doesn’t conform to unfair, unrealistic, simplistic expectations.” She goes on to assert that “we need to stop assuming that women can ever conform to a one-size-fits all label, because our experiences are historically, culturally, and personally contingent.” For Reagan and Pitzulo, their miscarriages were not imbued with tragedy. For me and Kate and Phoebe Day Danziger, ours were. To deny the tragedy of my experience, or of Kate’s, or of Danziger’s, or of countless other women, simply because it keeps the ideological lines neater is itself a tragedy. As we move into the twenty-first century as scholars, critics, and feminists, we must somehow come to terms with this divide. Pitzulo’s answer of seeing reproductive experiences and practices as “historically, culturally, and personally contingent” seems like a good place to start.

*Academic-speak for “All But Dissertation” — the point at which a doctoral student has completed her coursework and qualifying exams and has moved on to writing the dissertation.
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[1] Leslie Reagan, “”From Hazard to Blessing to Tragedy: Representations of Miscarriage in Twentieth-Century America,” Feminist Studies 29.2 (2003), 356-378.

I really can’t find the words to express how incredibly moved I am by this post. Sharing your grief in order to challenge people to a greater degree of complexity on the abortion issue is so courageous and generous. Thank you.

Nursing Clio is a collaborative blog project that ties historical scholarship to present-day political, social, and cultural issues surrounding gender and medicine. Men’s and women’s bodies, their reproductive rights, and their healthcare are often at the center of political debate and have also become a large part of the social and cultural discussions in popular media. Whether the topic is abortion, birth control, sex, or the pregnant body, each and every one of these issues is embedded with historical dynamics of race, class, and gender. Read our full mission statement →